Spotlight Urgent Patient Needs and Treatment Gaps

KANSAS CITY, Mo., Oct. 30, 2026 /PRNewswire/ — The Vasculitis Foundation (VF) is proud to announce the upcoming Vasculitis Community Forum: Patient Perspectives, a national virtual listening session taking place on Friday, November 20, 2026, from 12:00 PM to 2:00 PM ET. This landmark event will bring together patients, caregivers, clinicians, and key stakeholders from across the country to share lived experiences and highlight the urgent unmet needs in vasculitis care—especially the need for safer, more effective alternatives to steroids.

A Critical Moment for the Vasculitis Community

Vasculitis encompasses nearly 20 rare diseases characterized by inflammation of the blood vessels, leading to significant health challenges and, in some cases, life-threatening complications. While there are approximately ten FDA-approved therapies, corticosteroids remain a mainstay of treatment for most patients—despite their substantial burden of side effects and long-term toxicity.

The Vasculitis Community Forum is being convened at a pivotal time, as the community awaits key regulatory decisions that could impact access to alternative therapies. A key objective is to ensure that all stakeholders, including regulators at the FDA, hear directly from patients about the urgent need for treatment options and the real-world impact of current therapies.

Forum Agenda and Highlights

The two-hour virtual event will feature:

• A brief overview of vasculitis and the current treatment landscape by clinical experts
• Two moderated patient and caregiver panels sharing real-world experiences and the daily impact of the disease
• A focused discussion on unmet needs and the critical importance of developing and maintaining access to alternative therapies
• Opportunities for participants to contribute via chat and real-time polling

Members of Congress, the FDA, and other regulatory officials are invited to attend in a listen-only capacity, ensuring that patient voices are heard at the highest levels. The Forum will be facilitated by Wendy K.D. Selig, Founder & CEO of WSCollaborative, who brings over 30 years of experience in health sector strategy and patient engagement.

Driving Change Through Patient Perspectives
“The timing is right for the Vasculitis Foundation to shine a spotlight on the unmet needs and treatment-related priorities of patients and their care teams,” said Joyce Kullman, President of the Vasculitis Foundation. “By convening this Forum, we aim to provide a more complete picture of what it’s like to live with and manage vasculitis today—and to drive meaningful change in how therapies are developed, evaluated, and accessed.”

Following the event, the VF will publish a comprehensive whitepaper summarizing key insights and recommendations, which will be widely disseminated to clinicians, therapy developers, media outlets, and regulators.

Join Us
Registration for the Vasculitis Community Forum is now open. Patients, caregivers, clinicians, and all interested stakeholders are encouraged to participate in this important conversation. For more information and to register, please click here.

About the Vasculitis Foundation
The Vasculitis Foundation is the leading organization in the United States dedicated to improving the lives of people living with vasculitis through research, education, support, and advocacy.

Media Contact:
Joyce A. Kullman
President
Vasculitis Foundation
jakullman@vasculitisfoundation.org

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SOURCE VASCULITIS FOUNDATION